Remicade (infliximab)

July 23, 2010

More terrifying - the needle or me with no makeup?

I had my Remicade I.V. infusion today which went well, as usual. Today’s session was especially nice because for most of the three hours I was there, the entire place was empty. QUIET! While nurses took my vitals, pumped my veins with a steroid, saline, and finally Remicade, I tried to relax and read my book. These bi-monthly infusions are kind of a pain, but I prefer them over having to give myself injections of Humira or Enbrelweekly or bi-weekly (which I have done before). The Humira injection is especially painful due to the preservative that’s in it (the worst stinging pain you can imagine as soon as the needle pierces your skin). Yes, I’d much rather have a nurse gently hook me up to tubes than to have to stab myself with a sharp dangerous needle every two weeks in the fat of my lower abdomen or upper thigh. I’ve been on and off Remicade since 2003, and throughout all of the tests and trials of other similar medications, so far it’s been the one that has worked best. I feel very fortunate that during my decade of having RA I haven’t had a lot of trouble dealing with side effects from all of the strong medications I’ve been on. Other people I know and have heard about have suffered almost more from the meds than the actual RA. It’s a very frustrating and “Catch-22″ situation – what’s worse, the disease or the drugs?

Here is some “fascinating” information about Remicade from their website — if anybody’s interested in what is coursing through my veins at the moment:

REMICADE is a biologic therapy that recognizes, attaches to, and blocks the action of a protein in your body called tumor necrosis factor alpha (TNF-alpha). TNF-alpha is made by certain blood cells in your body.

The immune system protects the body by responding to “invaders” like bacteria, viruses, and other foreign matter that enter your body by producing antibodies and putting them into action to fight off the “invaders.”

A possibly lengthy, hopefully not boring post about the hula-hoops I have to jump through and numerous handstands I must do in order to afford to get this treatment. Without insurance , the total charges for Remicade and its administration = $6,275.00 – EVERY TWO MONTHS. I probably don’t have to tell you that my crappy insurance doesn’t pay for all of it. Thank God for The Patient Access Network Foundation, which has allowed me to continue with Remicade and therefore let me live a fairly normal life (instead of one of intense pain and probably bound to a wheelchair). But yes, more on this later.

I have lived with AS for nearly 30 years. Fatigue is normal – NO FUN – but normal for AS.

Best of luck with the Remicade treatment. I hope your RA responds to the Remicade.

I have not really discussed this particular question with any other RA ‘sufferer’ before, but perhaps you will offer your opinion on this matter – I would appreciate it:

If someone comes up to you and says, “You can do anything you wish to do, the only limitations that ANYONE HAS, are those you create in your mind, those you create regarding your self-confidence, self-image, etc.” However, (they say with reassurance), “You know, you can do whatever you put your mind to!”

What is your gut reaction to that statement, as someone who has been dealing with RA for a long time?

I see these athletes who have lost a leg, using some artificial limb, running in sporting events, and then I think to myself, “Damn, this guy lost his leg and can do that, run a race! These experts must be right!” So, I slowly put my sports shoes on, straining slightly to bend to tie each shoelace, feeling exhausted already before I get outside, and wonder if that was enough exercise. Nope, if the guy with one real leg can run that marathon or the 400 Meter Dash, then, damn’it all, I’ll walk that mile…and, I’ll walk it back, I won’t jump on the bus and cheat.

In my mind, I can do anything! I can lead a Special Ops team into a Hot L.Z. and take out an enemy force. I can be a test pilot for Boeing. I can climb Mt. Everest and traverse the banks of the Amazon River.

BUT IN REAL LIFE…my AS body tells me that I’d never pass the gruelling physical requirements of any Special Ops team, the CIA, FBI, or any Police Force. Because I have AS, and get Iritis on occasion, I’d never be allowed to fly a plane (probably). I’d walk a few blocks through thick jungle on my way to the Amazon river and then the pain would hit badly, and then I’d probably be asking the guide, “Show me the way back to the jeep, please.”

Personally, I WANT, I WISH, I DESIRE, to agree with these motivational experts who assure us that we can do anything we put our minds to, but of course, that would make me very happy. HOWEVER, in reality, I am pretty sure that I do have limits caused by the Ankylosing Spondylitis that has affected my joints, my body, for nearly 30 years.

I wish I could run in a marathon, but I am really pretty sure that I can not. On a pretty good day, maybe I can go on a good 1 or 2 mile stroll, and hopefully, at the end of the one-way trip, I have the strength to deal with the pain to make the trip home.

I wish I could do all the landscaping in the yard at my own will, spending hours if need be to spruce up the yard; but in reality, I can last a good 30-minutes and then my hip joints and lower back are KILLING ME (kicking my ass is more like it!!!) Then, it’s “break out the Tramadol party-time.”

I exercise, I eat right (most of the time), I try to keep a good mental attitude, although depression is part of the AS trap, and that sucks (A LOT).

Sometimes, I wonder if I am the only one feeling like this, that because of the disease, I am unable to do some of the things I would really like to do, or NEED to do. Or, am I just blaming the disease for things that other people with AS can do with little or no effort.

I DON’T LIKE the idea that I have limitations when ALL THE “EXPERTS” that clog the airwaves (WEB, Books, Oprah, etc) say that only you put limitations on what you can do. Should I have to feel guilty about not being able to spend a full day pulling weeds, or milking cows for 6 hours, or building a house for 10-hours straight, or even sitting in a chair for more than a couple hours at a time?

I would think that after having AS for nearly 30 years, I could have come to some truce with myself (to love myself more) and just accept what I can do, and what I can’t do so well because maybe all the experts are WRONG, and maybe people with AS, or some of them (at least) do have some limitations put on their daily activities that “NORMAL People” find easy to do.

Anyway, was wondering what your thoughts are on this matter.

My Medical “Level” at this Point:

1) Ankylosing Spondylitis.
2) Sacroiliitis.
3) Fractured my lower spine in two places and had to have Spinal Fusion of L4-L5-S1.
4) Other RA stiffness in hands, knees, sometimes, ankles, neck and ribcage.
5) Lingering Depression (off and on) for years. Have been on meds but never liked the side-effects, always feeling like a zombie, and they were not effective. So, I’m working on this on my own and with family support system.
6) Possible Fibromyalgia.
7)Oh, and my Rheumatologist says that since I’ve had AS for so long, and that it is leveled off (her words, “not active” LMAOBT!!!!), that I’m not a candidate for any of the new drugs (i.e., Remicade, etc.) It costs about 9K per visit – damned expensive!

Thanks for your blog entry, best of luck to you, and any input on the questions I have raised about RA and physical limitations…would be informative.

Hi Angela,
I have RA/Lupus diagnosed about 2 years ago. I’m glad I found your blog because you mirror what I am going though. I may start my own blog as a teacher in the health field and the ironies of having a chronic pain disease in a ‘healing’ environment.

Hi Kelly!
Thanks for the comment and for reading my blog. I’m hoping to start updating it at least once a week and to get on some kind of schedule. So you have both RA and Lupus? How are you doing? You should definitely start a blog if you’re interested in doing so! I think the fact that your work is health-related could be quite an advantage when sharing your own experiences as well as educating others. Good luck!